13 Replies

The recommended process is to start fixing the deficiency ASAP - with a course of injections - before serious damage can happen.

Once you start injections monitoring B12 is pointless.

The next step is to attempt to identify the source of the deficiency.

I'll bet your doc is one of those that think Pernicious Anaemia means large blood cells (macrocytosis). But your blood cells as shown by the MCV (Mean Cell Volume) are within range (although near the top of it). Many people with PA do not have large cells.

Read through the pinned posts (over on the right on the main PAS page) and you should find plenty of information to support your case.

Read up on B12def and maybe print the guidelines for your doc. Make an appointment and insist on immediate treatemnt as you have clear B12def symptoms and neurologic. You should have been put on injections straight away. Point out to the doc (it's in the info and links) that enlarged read blood cells are often absent as is anaemia. This has been known for about, well, more than a centuray. He might try and read up a bit and get in to the 21st like the rest of us...If he refuses, get a referral to a specialist or get another GP asap. With neur symptoms it is extremely important to get treatment and the right one quickly. Goodluck.

B12 and folate deficiency both are common causes of macrocytosis (large red blood cells) but not all people with deficiency have it. BCSH guidelines state 25% present with neurological symptoms. These are obviously harder to treat as guidelines recommend more B12 loading doses and maintenance treatment.

"An estimated 20% of patients with neurological signs do not manifest anaemia.13 Clinical features of anaemia may be minimal and the blood indices may not reflect important anaemia. Neurological symptoms can occur in isolation so it is important to consider a diagnosis of vitamin B12 deficiency in the presence of neurological symptoms of unknown cause, as neurological features may progress and become irreversible.

Subacute combined degeneration of the spinal cord involves demyelination of the posterior and lateral tracts. Initial bilateral peripheral neuropathy can progress to axonal degeneration and neuronal death if left untreated. This is followed by disturbances of proprioception, vibratory sense, and areflexia. Patients may mention clumsiness, poor coordination, and difficulty walking. Without treatment, weakness and stiffness may develop, manifesting as spastic ataxia. Damage to peripheral nerves results in sleepiness, altered taste and smell, and optic atrophy"

In many other European countries and Japan, your B12 levels would be considered very low so what many GPs consider normal results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', an excellent book by Sally Pacholok and Dr J.J. Stuart.

I found Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" useful and gave a copy to my GPs along with a copy of the PAS Symptoms list with all my symptoms ticked.

I thought it was strange that I basically had to wait a month to get tested/treated because I cannot see that the results would improve very much when I have been told by the GP not to self medicate, but as previosly mentioned I think he is a muppet .... have thought I had a B12 deficiency for months now and have been asking for a test which he never arranged. I was just cheeky and asked the nurse who kindly obliged.... but think I will have to go to Blue Horizon and get bloods done as I do not think he will do folate ferretin and Vit D !

I am going to read all the links you have posted for me I am extremely grateful for this as with my brain fog it can all get a little tricky

Hi Maud04. Just to let you know...as you have. B12 deficiency, your doctor should do folate, ferritin and vitamin D blood tests as a matter of course! Your GP may not know this.

You should be forced to go and pay privately...but many do!

Why not go back armed with your new information and insist that a) you are given the appropriate treatment and B) that you have the blood tests....according to the guidelines!

As others have said, and especially as you have neurological symptoms, it's really important that you a treated with B12 immediately.

The treatment for B12 deficiency with neurological symptoms is 1mg every other day until no further improvement and then 1mg every eight weeks....although this is not always be ought to keep some people symptom free.

Your GP may not know about the '1mg every other day until no further improvement' regime (many don't). It's listed in something called the British National Formulary (BNF). Your GP will have a copy on their desk so,it will be easy to as him / her to look it up. You may have to encourage them to read further than usual....it's the second item down!